Inpatient Palliative Care Services for patients with terminal illnesses in the UK and US: an
observational and literature review
Rebecca Teagarden, OMS IV
28 September 2008
Charles J. Cannon Edinburgh Geriatric Tutorial
The hospice and palliative care models of healthcare were originally employed in the
United Kingdom (UK). Dame Cicely Saunders established the first modern hospice, St.
Christopher’s Hospice, outside of London in 1967, which commenced care for the dying as a
medical specialty . Over the course of the next four decades, the concepts associated with
hospice and palliative care have progressively permeated worldwide.
Along with the geographic expansion of palliative care has come the broadening of
palliative care services. While much of the research, development, and experience within the
specialty of palliative care lies in the hospice realm, there has been steady advancement with
regard to inpatient palliative care. In fact, Ellershaw and Murphy note, “One of the greatest
challenges facing the palliative care world is to transfer the model that has been developed in the
hospice sector into the mainstream NHS.” (The NHS, or National Health Service, is the
government-sponsored healthcare program within the UK, which is funded largely by tax
Studies out of both the US and the UK have demonstrated that despite patients’
preferences to die at home, or at least, not in a hospital, the number of home deaths has remained
substantially lower than the number of deaths within acute care facilities [4, 5, 6]. In the UK,
data from the Office of National Statistics shows that 24.3% of people died within their homes
between 1974-2003. Overall, there was a slow, but steady decline of home deaths over this time
period. Meanwhile, the number of deaths among hospitalized patients rose slightly, from 54.3 to
57.8%. Long term projections estimate that if the same decline in home death continues, only 1
in 10 people by 2030 will die at home . Therefore, programs such as the National End of Life
Care Initiative/Strategy have aimed to increase the extent and quality of end of life care in all
Similarly, in the US, surveys have demonstrated that the general public prefers to die at
home . Nevertheless, studies repeatedly report that ~50% of patients die in the acute care
setting [5, 7, 8], and further, that 20% of Americans die in intensive care units [7, 8, 9, 10].
Such figures from both the US and UK lend credence to the advancement of palliative
care modalities. However, the expansion of palliative care services is not solely a response to the
aforementioned data; additionally, it aims to address the frequently reported shortcomings in end
of life care, particularly from the perspectives of patients’ families. Issues such as inadequate
symptom management, poor communication between physicians, patients, and family members,
poor interdisciplinary communication, delivery of care that is inconsistent with patients’ wishes,
lack of attention to emotional, spiritual, and psychosocial needs and late initiation of hospice
referrals have been mentioned numerous times, especially out of intensive care literature [8-15].
Today, models for inpatient palliative care typically consist of the following:
• Closed unit: a unit where physicians with advanced training in palliative care assume
responsibility over patient care and make decisions on appropriateness of admission to the
• Open unit: a unit where the patient’s primary care provider may continue oversight of care,
as well as determine whether or not the patient is appropriate for inpatient palliative care.
• Geographically separate unit: a unit separate from the hospital, with its own staff, which has
beds specifically for patients receiving palliative care.
• Integrated unit: a unit that occupies a small portion of a larger unit, e.g., palliative care beds
within a surgical, medical-surgical unit.
• Hospice inpatient unit: a unit designed for patients enrolled in hospice who are in need of
inpatient services; may also be utilized by other patients in the hospital who are not officially
enrolled in hospice. 
Researchers have offered several advantages to inpatient palliative care units. Most
prominently, inpatient units offer the benefit of 24 hour care, which is provided by healthcare
professionals trained in palliative care. Such consistent and skilled oversight can improve
symptom management, clarification of goals of care, effective communication, and realistic
discharge planning. Moreover, proponents of inpatient palliative care propose that the presence
of an inpatient unit within an institution both facilitates and encourages other physicians and
nurses in learning how to develop and implement palliative care principles into their practice of
medicine. Nevertheless, particularly in the US, consultation palliative care services remain the
most widely utilized inpatient modality .
The focus of the remainder of the paper will be devoted to comparing and contrasting
inpatient palliative care services in the US and the UK. This review is largely comprised by
results from an extensive literature review. Additionally, some of the points will be bolstered by
personal experience with an inpatient palliative care consultation service at the Royal Infirmary
of Edinburgh, a NHS acute care facility in Edinburgh, Scotland. The paper will conclude with a
discussion on the advantages and disadvantages of each system, and where, perhaps, elements of
the two systems could be integrated to yield better care for patients with terminal illnesses.
Inpatient Palliative Care in the UK
Current Initiatives. The current structure of end-of-life care in the UK began with the
inception of the Department of Health’s End of Life Care Strategy in 2004. From 2004-2007,
₤12 million was devoted to this program, which aimed to build on the strong foundation of
palliative care resources already in place. Stemming from that core was the development of
three new projects :
• Gold Standards Framework (GSF): attempts to organize and improve palliative care
delivered by general practitioners.
• Liverpool Care Pathway (LCP): this integrated care pathway was designed to transition
the best elements of hospice care into a modality that could be used in any other care
setting. This pathway is intended for use during a patient’s last days to hours of life.
• Preferred Priorities for Care: this advanced planning tool assists healthcare providers in
initiating discussions with patients and their families pertaining to carers’ and patients’
needs, preferences for EOL, and locally available services [6, 16].
Overall, the End of Life Care Strategy aims to reduce the number of hospital admissions
through administering the most coordinated and patient-preference oriented care at home or in
NHS continuing care facilities. Nevertheless, policy makers are quick to note that in the
foreseeable future, acute care facilities will more than likely remain the place of death for the
majority of patients .
According to the Hospice and Palliative Care Directory, as of 2008, there are 175 total
inpatient palliative care units in England; 42 are NHS sponsored, while 133 are funded by
voluntary organizations. In total, 2645 beds are strictly devoted to patients in need of palliative
care services in inpatient facilities across in England . In addition to specific inpatient units, as
of 2006, there were 307 hospital support services (or palliative care consultation services, as they
are referred to in the US) in the UK; within Scotland alone, there were 39 support services .
Even with these options in place, members of the Department of Health recognize that
improvements can be made. The following issues have been cited as areas for potential change:
• Acknowledging that care for the dying is an issue within the acute care setting;
• Addressing appropriateness of treatment;
• Attempting to make provisions for patients to return home if that is the most desirable
• Encouraging senior members of the healthcare team to accept leadership roles; and
• Educating staff at all levels of the tenets of quality palliative care .
Further, the strategy goes on to endorse the development of specialist palliative care
teams in all acute care hospitals, which are equipped with the skills to treat patients based on a
need basis, as opposed to specific diagnoses. From there, the plan outlines the development of
mechanisms to ensure adequate identification of patients at or near the end of life, initiation of
conversations relating to preferences for the end of life, and establishment of an appropriate care
plan. Additionally, creation of a framework of quickly discharging patients from the acute
hospital setting to NHS continuing care facilities – in an attempt to match goals of care with
those of the patient’s – has been proposed. Finally, effective documentation and monitoring of
quality of care round out the action plan for palliative care in the acute setting . In total, the
NHS plans to devote ₤88 million and ₤198 million over the course of 2009 and 2010,
respectively, in an effort to make the entire End of Life Care Strategy a reality .
The aforementioned principles and visions of the End of Life Care Strategy have been
embraced by the Scottish Partnership for Palliative Care. In 2000, the Scottish Executive Policy,
Our national health, a plan for action, a plan for change, suggested that palliative care should be
available for all on the basis of need, not diagnosis – much like the sentiment of the English
policy. With that in mind, the Gold Standard Framework Scotland was established.
Furthermore, the Liverpool Care Pathway has found its way into Scottish healthcare facilities,
including most acute care institutions. Early studies indicate that implementation of the LCP has
resulted in better symptom control, improved communication between patients, families, and
multidisciplinary team, and more optimal care for the patient following death . A sample of
the LCP (hospital) can be obtained at the following website:
Practical applications. Given the development and implementation of the LCP, the most
widely utilized care pathway in the UK, greater attention has been paid to the concept of illness
trajectory. Murray et. al.  has extensively described the three trajectories typical of chronic
illness today. Cancer, for example, tends to have a steady downward progression with a
foreseeable terminal phase. Chronic diseases such as COPD, heart failure, chronic kidney
disease usually display a gradual decline, which is interrupted, and accelerated by acute
exacerbations. Finally, a gradual, progressive decline characterizes the classic course of patients
with dementia or general frailty.
Even with these thoughts in mind, accurate prognosis continues to remain a great
challenge to providing appropriate care [15, 18]. Therefore, disease severity, rather than
predicted prognosis tends to be the guide in the UK. Generally, the following patient situations
indicate appropriateness when considering initiating the LCP:
• Bed bound;
• Only able to consume sips of fluids;
• Displays impaired concentration;
• Not able to consume oral tablets.
Along with much needed symptom control (Selected symptoms include: dysphagia, nausea,
vomiting, constipation, confusion, agitation, restlessness, distress, awareness, consciousness,
dysuria, respiratory secretions, pain, dyspnea, edema, pruritis), the LCP addresses the
discontinuation of non-essential treatments, promotion of insight into condition, awareness of
religious and spiritual needs, as well as the family’s understanding and wishes for appropriate
Barriers to care. Despite the presence of an integrated care plan, barriers to adequate and
appropriate end of life care continue with the UK system. Before examining the barriers, it is
important to understand the societal norms in the UK. Unlike the situation in the US, where the
concepts of autonomy and patient self-determination ground the decision making framework, a
much more paternalistic paradigm is employed throughout the UK [20-24].
Particularly in the acute care setting, end of life care often begins with decisions to
withhold or withdraw life sustaining interventions. In the UK, it has been customary for such
decisions to be made with little or no consultation of the patient or the patient’s family’s wishes
[20, 23]. Many reasons have been hypothesized for leaving the decision-making to healthcare
professionals [20, 24]. It is widely believed that making decisions about end of life care – from
withholding and withdrawing to implementation of a Do No Attempt Resuscitation (DNAR)
order, as is the case in parts of Scotland – relieves a tremendous burden from patients and
families. Further, some offer that patient and family expectations with regard to intensive care
interventions may be unrealistically high; without extensive and clearly articulated explanations,
many professionals experience difficulty in conveying reasonable probabilities of survival .
Additionally, in a system that is designed to provide for all patients, it has been offered
that the impact of fixed resources combined with an aging population that is demanding more of
those resources lead to an element of rationing of care through decisions to withhold or withdraw
treatment deemed to be “futile.” The UK courts go so far as to say that “continuance of intrusive
life-support systems” if deemed to have no prognostic indication constitutes “the crime of battery
and tort or trespass to the person” .
Nevertheless, even with the professional obligation to limit unnecessary and “futile” care,
a great deal of resistance to withholding and withdrawing curative care, in exchange for
transition to palliation, is documented in the literature. Proceeding with routine care, as well as
the perpetual idea that palliative care is analogous to “giving up,” remain great challenges within
the acute care setting. Such perspectives often result in missed opportunities to address concerns
and preferences for end of life care with patients and their families. Therefore, the latest layers of
the UK initiatives for improving palliative care in the acute care setting focus on involving
patients to a greater extent throughout the entire process of their illness. It is the hope of policy
makers that with time and continued implementation, professionals will begin to become more
comfortable with initiating conversations on advance care planning with patients and their
Results. Levack et. al.  recently published results from referrals to a hospital based
palliative care consultation service from 1999-2006. The team consisted of physicians with
palliative care training, as well as specialist palliative care nurses. Throughout their experience,
the team noticed a 300% increase in the number of referrals; much of the increase was comprised
by patients with non-cancer diagnoses. The consultants, in many cases, were able to manage the
most complex symptoms and initiate discussions on goals of care; ultimately, with increased
collaboration with referring specialists, the palliative care consultants were able to discharge the
care of the patient back to the referring team. Similarly, in addition to improved symptom
control, other studies have reported enhanced abilities to heighten patients’ insight into their
illness, to reduce overall costs of care, and to facilitate better communication with regard to EOL
issues secondary to the utilization of inpatient palliative care services. Much like the US, as
previously illustrated, this model of care is typical of that found in the majority of UK hospitals
Inpatient Palliative Care in the US
Current Initiatives. In comparison to the palliative care establishment in the UK, the
history of palliative care in the US is relatively young and continuously evolving. Palliative care
became recognized officially as a certified specialty in 2006 . With increased recognition
and training opportunities, over 1,000 inpatient palliative care programs were estimated to be in
existence in the US, as of 2006. Additionally, the availability of inpatient palliative care services
has become part of the criteria for certification by the American College of Surgeons
Commission on Cancer certification .
With that, one of the most emphasized movements in the US is to integrate and to
improve palliative care within intensive care units. The inception of this concept dates back to
1999, when the Robert Wood Johnson Foundation funded the Promoting Excellence in End-of-
Life Care program. This group of physicians and nurses aimed to analyze available resources in
an effort to draft recommendations regarding the advancement of palliative care. From this
study came the revelation that 20% of deaths in the US take place in the ICU setting or shortly
after receiving care in the ICU. In 2002, this group commenced the Promoting Palliative Care
Excellence in Intensive Care initiative, a movement toward improving palliative care for all adult
and pediatric patients receiving care in ICU settings, regardless of diagnosis or prognosis .
Initially, the Promoting Palliative Care Excellence in Intensive Care initiative named four
institutions as pilot sites for both study and intervention through a subset entitled, Merging
Palliative and Critical Care Cultures in the Medical Intensive Care Unit . Out of the
establishment of inpatient palliative care services at these locations came several important
findings regarding the need for palliative care, particularly within the ICU setting:
• Many deaths occur in the ICU; many more occur in the year following admission to the
• Many patients undergo unwanted admissions to the hospital at the EOL;
• Dissatisfaction and distress amongst families of patients in the ICU can be significantly
high, and appropriate support measures are often lacking; and
• Conflicts between families and medical staff with regard to appropriate treatment are
As a result of these findings, several key interventions were put into place in an attempt
to integrate the worlds of palliative care and intensive care. After establishing connections with
clinician-leaders within the ICU units, the group proceeded to extend staff education to the
broader ICU staff. Additionally, the group influenced several changes, which were felt to
enhance the ability to deliver quality care within the ICU setting. Such practices involved policy
alterations, such as the creation of open visiting hours, development of standardized forms for
quality control and greater attention to palliative care issues, and implementation of multi-
disciplinary rounds including palliative care specialists. Attempts to strengthen communication
between patients, family members, and healthcare professionals were made via placing greater
emphasis on regular family meetings, beginning at the patient’s admission, as well as by
encouraging the construction of “Get to Know Me” posters .
Practical Applications. Many arguments are made supporting the need for palliative
care, particularly in the ICU. In fact, Richard Mularski goes so far as to state, “The absence of
appropriate palliative and EOL care in the ICU should be viewed as a medical error,” [8,
The current initiatives advocate for many of the implementations that were made at the
pilot sites for the Merging Palliative and Critical Care Cultures in the Medical Intensive Care
Unit. More specifically, the calls for change emphasize strong interdisciplinary communication
and collaboration, appropriate and effective symptom management, and patient and family
centered care that involves shared decision-making between patients, families and healthcare
providers [10, 11].
Such concepts become particularly important when revisiting the idea of illness
trajectory. As is commented on in the British literature, American literature acknowledges the
variability of illnesses, which can take on courses of sudden death, progressive decline, or slow
progression with occasional exacerbations . Given the myriad of possibilities, which are
further complicated by the element of individuality, Campbell argues that the tenets of palliative
care have a much needed place within the ICU, as “nurses and physicians who practice in the
ICU are largely trained in resuscitation and prolongation interventions, with little or no training
in palliative care competencies,” [7, p.S355].
Barriers to care. The aforementioned interventions and points supporting palliative care
in the inpatient setting are derived from the well documented literature on barriers to quality care
– many of which have been previously discussed – especially at the EOL. From the onset,
proponents of palliative care are met with the challenge of societal attitudes. Across the US, a
widespread denial of death persists [12, 29]. With the continuous advancement of technology
comes greater demands and expectations with regard to healthcare provisions. As a result, the
combination of patients and families demanding more treatment coupled with physicians’
reluctance to initiate conversations related to the goals of care often lead to the default option of
proceeding with routine care in the ICU .
Therefore, it has been proposed that in addition to interventions directed specifically at
healthcare practices, an element of societal education must also take place in order for the
aforementioned implementations to be successful. Acknowledging the inherent difficulty in such
a task, some palliative care proponents suggest that earlier introduction of palliative care options
throughout the course of one’s illness is one way to promote greater understanding of the tenets
and goals of palliative medicine. In effect, palliative care becomes a supplement to critical care,
thereby attempting to provide a more seamless transition into the spectrum of palliative care
measures when the benefits of curative care diminish .
Results. Recognition of the need for palliative care services in the inpatient setting is
supported by the recorded 67% growth in programs from 2000-2003 . Increases have been
linked to the rising number of physicians and nurses receiving certification in palliative
medicine, the emergence of more palliative medicine fellowships, and an increasing amount of
funding, research, and literature devoted to palliative care. Further, some characteristics
common to institutions that have implemented inpatient palliative care services include large
hospital size, academic center status, not-for profit status, and affiliation with the US Department
of Veterans Affairs .
The rise in the number of inpatient palliative care services has generated a number of
findings to bolster the benefit of palliative medicine, particularly in the ICU setting. Recent
studies have noted more expedient implementation of symptom control, which has also led to
addressing prognosis earlier on in the course of patient care . Additionally, inpatient services
have resulted in fewer subsequent hospital admissions following discharge, as well as an
increased number of patients being discharged from the hospital with advance directives in place
[12, 13]. Another benefit, albeit not of top priority to proponents of palliative care, is cost
savings. Several studies have reported on decreased lengths of stay in the ICU, as well as to
more withholding or withdrawing of non-beneficial treatments secondary to the presence of
inpatient palliative care services [7, 12, 13, 31].
Similarities. A number of the previously described aspects of inpatient palliative care in
both the UK and the US are similar. First, both the British and American systems are faced with
the challenge of ~50% of deaths occurring in the inpatient setting. Therefore, it is reasonable
that within the practice of palliative care, the following goals would exist within both systems:
• Attainment of appropriate symptom control;
• Implementation of effective interdisciplinary care;
• Improved communication between healthcare providers, patients, and families;
• Increased education and awareness of the concepts of withholding and withdrawing non-
beneficial care; and
• Promotion of greater patient insight into disease process.
As mentioned above, while the number of inpatient units strictly devoted to palliative
care are on the rise in both the UK and the US, such objectives, at present, are carried out
primarily by inpatient hospital support services or consultation services. Additionally, both
systems have shared the benefit of reduced lengths of stay and subsequent hospital admissions,
of greater symptom control, and of enhanced patient and family satisfaction.
Differences. While, in some respects, both systems are arriving at the same results, there
are a number of notable differences. From the beginning, the slowly evolving, though still
present paternalism of medical practices in the UK should be highlighted in comparison to the
emphasis on autonomy in the US. With such paradigms in place comes the focus on the opinion
of the medical team in the UK, versus the importance of patient preferences in the US.
The implementation of palliative care measures is slightly different between the two
systems. The UK has the Liverpool Care Pathway, an integrated care pathway that can be found
in almost all healthcare institutions, including hospitals, hospices, care homes, and with in
community-based general practices. In the US, however, guidelines and protocols have been
drafted by many of the leading organizations in hospice, palliative medicine, and cancer care.
Further, many institutions have adopted individual protocols. One of the observed strengths of
having one standardized or national protocol is that almost everyone from consultant level
(attending physicians) to medical student was familiar with the Liverpool Care Pathway. In
theory, the increased awareness and confidence in using one unified, easily transferable
document could lead to greater utilization and implementation. The continued fragmentation of
care in the US has resulted in efforts to create, at the very least, palliative care order sets in an
attempt to increase comfort levels related to implementation of palliative care .
Fragmentation is displayed throughout the realm of funding, as well. As previously
outlined, while donations do comprise portions of palliative care budgets in the UK, the NHS has
devoted an increasing amount of financial resources into further research, development, and
implementation of palliative care in all healthcare settings. By comparison, palliative care in the
US remains under-funded. With that thought in mind, it is not surprising that the majority of
institutions with established inpatient palliative care share many of the same characteristics: large
hospital size, academic center status, not-for profit status, and VA centers.
Despite the differences, it is clear that the movements to integrate palliative medicine into
the inpatient setting in the UK and the US are strong and proven to be effective. Proponents of
these movements in both the UK and US are quick to note the slow, but steady progress.
Nevertheless, a growing number of healthcare professionals from a variety of specialties are
recognizing the utility of palliative care within the acute, inpatient setting.
Having had the opportunity to observe inpatient palliative care services within both the
UK and the US, it is clear that no perfect system exists. Nevertheless, with so many similar
practices in place, among the advantages of the UK practices are greater awareness to the need
and benefit of strong palliative care practices, the implementation of more substantial funding,
and the institution of the widely used LCP. Slowly, practices in the US are encouraging the
utilization of available palliative care services. With increased awareness and confidence in both
the benefits and accessibility of appropriate palliative care options, hopefully palliative care
options will continue to become more widely offered to patients and their families at the end of
life in both the UK and the US.
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